Help for those with mental illness: Waynesville couple helps start local NAMI chapter

When John and Suzanne Gernandt’s son Matthew began showing signs of schizophrenia, it might have been misread as teenage rebellion — a phase he would pass through once the hormones settled down.

But Matthew’s behavior became more and more evident of something beyond teenage tantrums. He would eventually be diagnosed with a blend of schizophrenia and bipolar disorder. Matthew’s chances of a fulfilling future may well have ended in high school had it not been for a support system. Through a combination of therapy, medical treatment, and the loving care of parents and friends, Matthew returned to high school and graduated at age 20. He is now looking at studying art in college.

It wasn’t easy. The Gernandts, both successful craft artists who own and operate Textures gallery in downtown Waynesville, discovered how expensive it was to pay for Matthew’s drug medications. Some doctors and insurance companies refused to cover the expenses. Monthly costs soared to between $800 and $1,100. The Gernandts had to apply for Medicaid. Matthew, meanwhile, had a tough time keeping up with studies and holding down jobs.

“How do you read when people are screaming in your head?” said John.

With all that the Gernandts struggled through and learned in the last several years, they now want to share their insights and empower other families who have relatives or children with mental illness. Together with some other local families, the Gernandts are helping to found a new support group chapter connected to the National Alliance on Mental Illness. NAMI, as it is called for short, has about 220,000 members nationally with a broad network of services and educational programs aimed at helping people learn more about the nature, treatment and issues concerning mental illness. While three dozen NAMI chapters are scattered throughout North Carolina, none exists west of Asheville, so the Gernandts are helping to establish one.

After meeting for several months at the Smoky Mountain Center for Mental Health, Developmental Disabilities and Substance Abuse Services in Sylva, they decided to hold meetings in a classroom at the First United Methodist Church in Waynesville. The next meeting will be held at 7 p.m. Thursday, Nov. 16, in the Asbury Room of the church. The group plans to meet on the third Thursdays of the month at the church and may also meet at the Smoky Mountain Center in Sylva to accommodate Jackson County residents. In order to set up an official NAMI chapter, five families have to be involved in the support group.

NAMI helps both the families and the people with mental illnesses find encouragement as well as treatment. Mental illnesses can range in a spectrum from mild depression to schizophrenia and also includes more severe forms of depression, obsessive-compulsive disorder, panic disorder and bipolar disorder. Recent movies like “A Beautiful Mind” or hit TV shows like “Monk” have been able to shine a spotlight on people with mental illnesses, but there’s still a great deal of misunderstanding out there, according to the Gernandts.

For one thing, mental illness affects more people than you might imagine. According to NAMI statistics, about one child out of every four will have some type of mental disorder causing at least a mild functional impairment. In North Carolina alone, somewhere between 45,000 and 81,000 children and adolescents have a serious emotional disorder.

“And it seems like more and more children are being diagnosed,” Suzanne said.

Nationwide, more than 44 million Americans have diagnosable mental disorders, according to a report from the U.S. Surgeon General. A decade ago, the cost of treating Americans with mental illnesses was $69 billion.

Just when statistics seem to show more money needs to be spent on helping people with mental illnesses, states like North Carolina have been cutting funding. Instead of the government paying for mental health services, private companies are being asked to take on this responsibility, according to Dan Lane, a Waynesville resident whose daughter was diagnosed with schizophrenia some 30 years ago. Lane, who served as the former president of Asheville’s NAMI chapter, has seen a general trend among states to dole out fewer dollars for mental health while Medicaid reimbursements have not caught up with the rising cost of health care. Then, when county governments have more of a burden to pay what the state doesn’t, those local dollars are diverted to other projects.

“It’s chaos really,” Lane said.

So part of establishing a new NAMI chapter will be to advocate improvements in public policy so Medicaid, government agencies and insurance companies adequately cover the health care cost of treating people with mental illnesses. As it is now, the expense of some drug treatments can bankrupt families.

“If we weren’t self-employed, I don’t think we would’ve been able to do it,” said John Gernandt.

It’s also important for the general public to know more about mental illnesses and get over the stigma attached to them, Suzanne Gernandt explained.

Oftentimes people toss around words like “schizo” when they describe someone who may be acting drunk or strange. But schizophrenia is a real, diagnosable disorder that should not be treated lightly.

John compares mental illness to diabetes. Just as people with diabetes have to check their insulin levels several times a day, so too should people with mental illness check on their mental state several times a day.

“You shouldn’t be ashamed because you have mental illness,” John said. “It’s a disease. It’s nobody’s fault.”

Researchers are learning that chemicals in the brain can cause these disorders and that some may be inherited. While children may look and act normally from birth into their teenage years, schizophrenia can suddenly appear in their middle teens to early 20’s, causing major changes in behavior. While mental illness is not curable, the most effective treatments combining drug medications and therapy can help people live rewarding lives.

Unfortunately, too often people with mental illness get brushed aside, made fun of, and ignored. Twenty percent of people with a mental illness attempt suicide, John said, and one out of 10 end up killing themselves.

Meanwhile, plenty of well-intentioned people attach a label to a person with mental illness and forget the person. To label people as “schizophrenic” is to take away part of their humanity. It should not define who they are, Suzanne explains. A person may have schizophrenia, but it’s not all of who he or she is.

“Matthew is not his illness,” Suzanne said of her son. “He’s a person with dreams and hopes and aspirations just like anybody else.”

In the support group sessions, people with mental illness are called “consumers” while their family members, relatives or friends are called “providers.” In that way, some of the negative connotations are taken away. The group meets together and then breaks up into roundtable discussions with consumers in one area and providers in another.

The Gernandts would like to see local law enforcement and emergency agencies receive more training for how to work with people who have mental illnesses — for example, using nets instead of guns to disable a person who appears to be a threat.

As the support group gains momentum, the Gernandts say they would like to organize more public programs to raise awareness about mental health issues.

For more information about NAMI, go to the Web site www.naminc.org or call the helpline 1.800.451.9682.